Saturday, October 23, 2010

The Misuse of Labels

When talking about practically any subject, we use certain words or phrases to represent another, more complex topic. If you had to fully articulate a complex subject each and every time that you wanted to talk about it, you would be unable to express any complex idea in a reasonable amount of time, which would be a bad thing (unless you are an Ent). So these shortcut are necessary to have any sort of real conversation.

When you take this idea of shoving a series of ideas behind a single work or phrase and apply it to medicine or child development, what you get is called a label. The purpose of the label is to describe a complex condition and wrap it up in a single word that fits nicely into a sentence. That way you don't have to say a child has "impaired social interaction and communication skill, restricted and repetitive behaviors, and potential sensory issues" all of the time, you can simplify that and say that the child has autism.

But there is the problem with the labels. They only work as long as everyone has the same idea of what they mean. If you have a group of people who start using the label to mean something else or attach their own custom meanings to the word then the entire idea breaks down and all you are left with is confusion.

Take for example the the label of "gifted" as it is applied to a child. This label is relatively straight forward and means that the child is very intelligent or talented or, as the National Association for Gifted Children puts it -

Students, children, or youth who give evidence of high achievement capability in areas such as intellectual, creative, artistic, or leadership capacity, or in specific academic fields, and who need services and activities not ordinarily provided by the school in order to fully develop those capabilities

The "gifted" label is not that complex idea. Yet there are those who take a relatively simple label and seem to feel the need to make it into something that it is not. A perfect example of this is an article published in the New Scientist called Prodigy psychologist: The gifted child's curse. From the first paragraph -

When children are labelled as "gifted" we like to think the world will be their oyster when they grow up. Be very careful, warns British psychologist Joan Freeman. As she explains to Alison George, her 35 years of studying children with extraordinary abilities has revealed that the label has as many negatives as positives

The rest of the article continues in the same vein, but what is missing from it is what is negative about the label "gifted". The psychologist being quoted describes many problems with how parents react to the label or how gifted children don't always go onto to be successful as an adult. All of these "negatives" describe how people's reaction to the label might be less than ideal or how having a certain high level of intelligence doesn't guarantee success. But none of these negatives have to do with what the label represents - being "gifted" is not a negative.

I think the problem comes about because people are unable to separate the characteristics of a label from the person themselves. A label just describes one part of who a person is and is not meant to describe every facet of a person.

Just because you are "gifted" does not mean that you are a hard worker or that everything is going to be easy for you. Nor does it mean that you will have the perfect parents who will provide the optimal learning experience to bring out your exact talents. These are larger issues that need to be dealt with in the context of being a person and are not explicitly tied to the idea of being gifted - you can still have these issues without being gifted and being gifted does not mean you will have these issues.

On the flip side, you have a label like autism where people try and take what are mostly negative attributes and make it into a positive. When you look at what goes into the label of autism, you will find a set of characteristics that everyone can have little bits and pieces of but, in autism, are taken to unhealthy extremes. That is what the label autism means - there are issues with communication, social, and restricted interests that are severe enough to cause major problems. None of the attributes that go along with the label "autism" are a good thing.

But just because you have a label of autism does not mean that you are just a set of negative characteristics- there is much more to a person that just a label of autism. A person with autism can be smart, funny, loving, caring, or any of the other traits that can apply to any other person. The autism label just describes one small part of who a person is.

However, there are a small number of people who are attempting to hijack the autism label and make it mean something completely different. Perhaps the best known of this group are the "aspies" who are trying to turn the label Asperger's into something that it is not. Lets be clear here, the Asperger's label is part of what is know as the autism spectrum and, as such, is a form of autism. But if you listen to what these aspies have to say, they will tell you that Asperger's is not autism. They will tell you that Asperger's is about being highly intelligent, dispassionate, and being neurodiverse.

But that is not what the label of Asperger's means. Having Asperger's does not means you are automatically intelligent or dispassionate and not everyone who is technologically proficient and social awkward has Asperger's. You can still be intelligent and have Asperger's but one does not means the other.

You may think this entire discussion is moot and pointless but I think it matters a great deal. As I have talked about in the past, many of those seeking to turn the label of autism into something that it is not are doing so on the backs of those who are more disabled.

The end result of this hijacking of the autism label is you have people like Ari Ne'eman talking about how "autistic people" don't want to be cured, or Michael John Carley saying that they find the idea of being lumped in with lower functioning people with autism "hard to shallow" because they sometimes have to wear adult diapers, or Hannah Fjeldsted saying it would be "aninsult and a mockery" to be lumped in with the lower functioning because aspies have their pride to think about.

And this insanity is not only limited to fringe people like this, it is slowly spreading to more reputable places like WebMD -

Some traits that are typical of Asperger's syndrome, such as attention to detail and focused interests, can increase chances of university and career success. Many people with Asperger's seem to be fascinated with technology, and a common career choice is engineering. But scientific careers are by no means the only areas where people with Asperger's excel. Indeed, many respected historical figures have had symptoms of Asperger's, including Wolfgang Amadeus Mozart, Albert Einstein, Marie Curie, and Thomas Jefferson.

There are so many things wrong with the paragraph it isn't even funny. People with Asperger's aren't focused on details, they are obsessed with certain specific ones and not in a good way (Restricted repetitive and stereotyped patterns of behavior, interests, and activities anyone?). Nor is there an automatic relationship between technology and Asperger's - that is a myth. And don't even get me started on the absurdity of saying that historical figures could have had Asperger's because of certain characteristics that appear in writings about them. All of the labels are based on a set of characteristics that appear to a greater or lesser extent in all people but having some similar characteristics does not mean you have "symptoms of Asperger's".

I have no idea when this nonsense starting appearing on WebMD but it certainly is evidence that the attempted re-branding of Asperger's and, by correlation, autism is taking hold. Unfortunately, these ideas create an image of autism that those who are more severely affected will never be able to live up to. Maybe the solution is to remove the Asperger's label from the rest of the spectrum and let the aspies redefine it to mean what ever they think it means this week.

But regardless, the point is that when using a label you have to use it correctly. You have to be able to separate out the characteristics that it implies from the person as a whole. Each and every person is much more than the sum of their labels and just because a person has a specific label does not mean that they are limited to being just the label. A person is a person, not a label.

I love the quote When you've met one person with autism..... you've met one person with autism'. Labels can help if there's a pot of money to go alongside to help and support but everyone deserves an assessment of strengths and needs, not just a label. I'm also concerned that the ASD label is given too freely. There are many children who have social interaction problems and language difficulties who present as a little different for a while but who shouldn't receive a diagnosis of autism.

What is the purpose of labels/Dx's? -sociologically, in medicine a label legitimizes a problem, and allows (virtually requires!) the person to seek help. One can only wonder why HFA's want the ASD label? I propose "variant on auto-munchausen syndrom"

While my personal "label" rant is against "gate keepers" there are other things wrong with labels -as you point out: "one person." A label is a shortcut - and when that shortcut is ill-defined it becomes worthless.

I think that is the other side of this argument. People get so fixated on the idea that they have autism that they view autism as a part of who they are rather than a description of some of their characteristics.

It's not good to focus on one detail, it means you probably won't have a "well adjusted" life. Its not a good way to be one of those preppy ASB kids in school. But you might create something write something solve some problem. I agree that Asperger supremacy attitudes are abhorrent but that is because I believe in Neurodiversity. Basically people with Aspergers tend to have an easier time talking with non autistic people, thats the main difference. We don't have to conclude everything about Autism is bad, much of what defines it is actually strengths, "hypersensitive to sound" thats a fancy way of saying really good hearing. For those Autistic people who have a picture mind(I am quite the opposite) thats cool. Its just different than what is typical for humanity, but normal for most other life on Earth.

"We don't have to conclude everything about Autism is bad, much of what defines it is actually strengths, "hypersensitive to sound" thats a fancy way of saying really good hearing."

Actually, no, "hypersensitive to sound" is not a fancy way of saying really good hearing. Nor does that phrase imply that you can hear better than an average person.

The phrase, like so many labels, means exactly what it says and nothing more. As in a person who is hypersensitive to sound has an abnormally strong response to sound. The strength of the response does not mean that you can process sound information (hear) better.

In practice, hypersensitivity might translate into hearing better because you can pick up on faint sounds that others might miss. But more often it is going to mean that you can't hear as well because you be overwhelmed by sound and not able to separate out the important sounds from the unimportant ones.